My name is Brooklyn. I am six years old and I have Rett Syndrome. My mommy works with a wonderful Rett Syndrome organization called Girl Power 2 Cure. Be sure to check it out www.girlpower2cure.org
I hope you enjoy this blog...it is filled with stories and pictures of our family's life with Rett Syndrome.

Wednesday, January 25, 2012

Quick little update on Brookie Bean. She had her sleep study last night. She was a rock star - I wish I would have thought to take a picture of her - I have NO IDEA how she slept at all - probes on her head, by her eyes, and on her chin. She had a belt thingy around her chest and another one around her diaphragm. pulse ox on her toe and more sticker things up and down both legs - wow!This is our last "hoop to jump through" before we can schedule her hip surgery. So, we are hoping nothing crazy comes back when they read the results.Unfortunately her seizures are back daily :( booooo we are upping her keppra again she is on the highest does of Banzel she can be on for her weight. I assume that if this mixture does not work it will be back to the drawing board on a new mixture of anti-seizure meds :(On Friday we are heading to see a surgeon about her g-tube. Her current one is WAY to big and her GI doc feels "she will grow into it." which of course is not acceptable - it was chosen because it is the lowest profile button - but it is so huge it sticks out from her belly over a half an inch. very frustrating. I will let you know how that goes!Thank you ALL for your continued support, love, & prayers!!!

3 comments:

Hi BrookieMy name is Jenna and I came across your site. You are a courageous, strong and determined fighter. U are a brave warrior, smilen champ and an inspiration. You are a princess hero, beautiful trooper, and a tough cookie. You are a precious earthly angel and a special gift. http://www.caringbridge.org/visit/champ291

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